Sunday, April 3, 2011

Fundraising for Cushing's Awareness Month


Exactly four years ago in 2007, I cried at home after receiving a call from the doctor's office.  The nurse told me that my recent lab results, including a thyroid panel, were normal. That should have been good news, right?  WRONG. I didn't feel normal. In fact, I felt worse than I had ever felt before in my life.  That afternoon, I took to the computer to research my symptoms on the internet.  When I found the message boards, my mouth dropped. It took less than an hour to find my diagnosis.

My husband returned home after his work day less than an hour later. I announced, "I think I have a tumor on the pituitary, which hangs below the brain. I think I have Cushing's disease."

Not one day since has gone by without a thought of Cushing’s. I’ve spent many hours every day thinking about Cushing’s. Have you ever spent 1,461 days of your life sick, trying to save your life, and knowing that if you can’t convince doctors to help you that you may die?  It is not easy.  Life has not been easy for me or my family these last four years. This word and this disease have infiltrated my life.

I owe my life to MaryO, who founded the Cushing’s Help website and its message boards over 10 years ago after suffering with Cushing’s disease herself. MaryO set forth to create an online community that was lacking when she sought her cure.

I have met many shining souls and made incredible friends participating on the message boards in the past four years.  We were lost without each other. We each came to the message boards new and scared.  We leaned on each other, as we ran everything about our experiences through these people – these new-found and desperate friends who were in the same boat as us.  We learned from each other.  Together, we shared our stories of terrible doctors’ appointments where we were dismissed as fat and lazy.  We celebrated every high test result, every clearance for surgery, and all the other details that move us forward on the journey for this disease. In this community, we found the strength to keep fighting to get cured from the disease that we were sure we had but others weren’t. We Cushies have faced seemingly insurmountable odds, and we have done so together.

Our fury and outrage male us determined to protect future undiagnosed Cushies from all of our heartaches and woes.  We hold a strong desire to create a powerful online community, and in 2008 many of us started personal blogs. My blog Cushing’s Moxie is my platform for outreach, and to date, my blog has been over 116,000 pages views. 

I learned from people who had been in my shoes. It was only through struggles with doctors and testing to diagnosis to surgery -- with this process often repeated multiple times unfortunately -- and eventually to healing and happiness that I learned what this disease is, how it truly presents itself today (not 20 years ago), how it affects the people who have it, and how to best guide myself through the quagmire.  Because of MaryO's compassionate vision and my fellow Cushies’ guidance and support on the message boards, I have steered myself to diagnosis twice for a disease that most have never heard of and doctors consider too rare.  I just can't even imagine where I would be without the site.

With Cushing's Awareness Day approaching on April 8th and my 2nd pituitary surgery scheduled for April 20th, I decided to declare April as Cushing's Awareness Month.  Goodness sakes, you know we need the extra time!  It takes us that long to explain the intricacies of this dangerously elusive disease.

So there you have it. It is Cushing’s Awareness Month. 

As such, I decided to raise funds to support the website that saved my life.   For my friends and family who have followed me along this bumpy four-year battle, I ask that you consider making a donation to support the community that I have grown to love and call my 2nd family. 

Operating and maintaining the site takes money.  It is imperative to keep the site free and totally available to all who search the internet for an explanation to their confounding symptoms. We must keep the site operating for others like me who search for their cure.  I ask you to join me and donate to the support this important website.

I hope to raise $500 in April 2011.  Can I count on you to donate $10?

Cushing's is a terrible disease. It ravages the body and nearly destroys a person seeking only diagnosis, treatment, and control of the rest of their life again.

The world must continue to hear about Cushing's, as this disease is not as rare as doctors think. We Cushies believe it is only rarely diagnosed.  Please consider a donation to maintain a strong presence on the web for undiagnosed Cushies to find. 

I have many interesting posts planned for Cushing’s Awareness Month this April.  As I face a daunting second pituitary surgery, I refuse to let the opportunity to help someone pass me by.   On April 20th, I will go under general anesthesia and lie on an operating table while the neurosurgeon goes through my nose to cut out a second tumor on the pituitary, only centimeters from my brain. 

In the upcoming weeks, you might say to yourself:

“YIKES. She’s been through so much. I love that girl. I’ll ante up a donation of $10 for her Melissa’s moxie.” 

Putting words in your mouth? I hope so. 

Laying it on thick for an important cause,
Your truly,